Thursday, May 12, 2011

Fibromyalgia Awareness Day

Today is fibromyalgia awareness day. I guess it is a day set aside for people who do not know anything about fibromyalgia because if you have it, you are definitely "aware". As a matter of fact, it is pretty hard to forget. Just last night at church I was chatting with a friend whom I have known for a while and she mentioned a health problem she was dealing with and asked if that sounded silly. I told her that wasn't silly because I dealt with it because of my fibromyalgia. She got tears in her eyes, grabbed me up and said, "Oh my goodness. I didn't know anyone else had this."

Fibromyalgia is a weird illness. It affects every person differently and no two people experience the same symptoms, levels of pain, levels of fatigue, or even the same physical challenges. However, there are some symptoms and challenges that each of us have in common.

Have you ever had the flu? I mean a really bad case of the flu. Imagine if the only symptom you had was the incredibly awful body aches and pains, the chills and the nausea. Imagine that you felt feverish, but it didn't register on a thermometer. Your muscles and bones ache, but your skin cool to the touch.

Now imagine that you went out the day before you came down with the flu and were working in the yard. Your muscles are really sore. You even managed to get a bad bruise or several all over your body and it hurts to even touch it.

To top all of this off, you are having a hard time sleeping and you have been up for about the last 48 hours. You can't seem to put together a rational thought and concentrating is a dream in and of itself. You are soooo tired, you can’t make sense of things sometimes, you can’t keep your eyes open, you feel dizzy and strange, and all you want to do is lie down and sleep for as long as you can. Imagine you get the opportunity to take that nap that you’ve been craving to take all day long and when you lay down all of a sudden you can’t get to sleep to save your life. You can’t figure out why, because your body and brain feel like they’re going to drop at any moment. Why wouldn’t you be able to sleep??? You get frustrated and angry because all you want to do is drift off and rest.

Since you can't sleep you decide you might as well "do" something, but you just can’t hold onto objects very well and you seem to be dropping a lot of things for no reason that you can determine. Imagine a time when you were really nervous and your legs and arms felt like spaghetti. You trip over things and can’t seem to feel sure of your footing.

Now…add all of those together and you get what most people with fibromyalgia feel 24 hours and day, 7 days a week.

Unfortunately, those are just SOME of the symptoms we live with. Some of us also experience irritable bowel syndrome, migraine or stress headaches, blurred vision, weight gain (oh man have I experienced this one!), and much more.

I was diagnosed in 1994 after a year of going from doctor to doctor. My diagnosis was very official. My doctor walked in and handed me a pamphlet and said, "This is what you have. You won't die, but you will wish you were dead." Hmmm... that sounded encouraging.

Trying to explain it to my family and friends was pretty weird too since I looked completely normal. If I had money for all the people who said, "You don't look sick." I could pay my bills.

I have been more than blessed because I have an incredible husband who has believed in me and stood by me since the moment I got sick. He was the one who set up our method of communication regarding this fibromyalgia. Instead of letting this sickness become a focal point, he set up a 10 point scale with 1 being awesome and 10 being I have to go to bed. We still use this scale. If he is worried about me of if I need to let him know it is going to be a bad day, I just let him know my number on the scale.

Has fibromyalgia been frustrating to us? Yes! Has it affected our lives? Yes! There have been many times when we have had to cancel plans or rearrange our schedule all because of fibro. We have both had to learn to let some things go that used to be important to us. "Live in the moment" is our thought process.

While we "live in the moment", we also have become great at planning. We both have calendars and we use them. I know his schedule and he knows mine. Being able to keep track allows us to plan in the rest periods that I know I am going to need. He knows that I am not going to be able to handle four days in a row of all day events. Planning ahead is great, but we plan with the thought that plans change. Making that decision has allowed us to avoid a lot of stress, disappointment, and resentment.

When I first was diagnosed with fibromyalgia, I wasn't sure how I was going to live the rest of my life feeling like this. However, God showed me that I truly can do all things through him who strengthens me. (Philippians 4:13) I have discovered that I can control this instead of it controlling me most days. There are some days when it gets the upper hand, but I realize that that is part of the process.

I have drawn closer to my God, my husband and my sweet boys through this illness. Because of that I consider it a gift instead of a curse.